European Health Data Space cannot compromise on patient data privacy


(14 February 2024) EPSU joined fourteen other organisations from across Europe to call on European Health Data Space negotiators to uphold fundamental rights for European citizens in the regulation.

A joint letter co-signed by various organisations and trade unions, including EPSU, calls for the inclusion of an unequivocal right for individuals to opt out of both primary and secondary uses of their medical records within the EHDS framework. Highlighting the European Parliament's recognition of the significance of patient trust in the healthcare system, the letter argues that denying patients the right to opt-out would undermine fundamental privacy principles outlined in GDPR and compromise doctor-patient confidentiality. Negotiators should adopt the provisions proposed by the European Parliament, which afford patients the right to opt out of secondary use of their medical records and require explicit consent for health information that cannot be anonymised.

Even an opt-out mechanism can only be effective with the provision of clear and accessible information to patients about their rights regarding data usage within the EHDS. The EHDS will only work as an effective digital health infrastructure with the trust and buy-in of patients and workers. This can only be achieved by respecting data rights and ensuring active participation in health data decision-making processes.

Read EPSU’s position on the European Health Data Space here.

Read EPSU’s reaction to the European Parliament’s position on the European Health Data Space here.

Read EPSU’s reaction to the Council of the EU position here.